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Kathrin Woitha, Karen van Beek, Nisar Ahmed, Jeroen Hasselaar, Jean-Marc
Mollard, Isabelle Colombet, Lukas Radbruch, Kris Vissers, Yvonne Engels
To cite this version:
Kathrin Woitha, Karen van Beek, Nisar Ahmed, Jeroen Hasselaar, Jean-Marc Mollard, et al..
Devel-opment of a set of process and structure indicators for palliative care: the Europall project. BMC
Health Services Research, BioMed Central, 2012, 12, �10.1186/1472-6963-12-381�. �hal-01393731�
R E S E A R C H A R T I C L E
Open Access
Development of a set of process and structure
indicators for palliative care: the Europall project
Kathrin Woitha
1*, Karen Van Beek
2, Nisar Ahmed
3, Jeroen Hasselaar
1, Jean-Marc Mollard
5, Isabelle Colombet
6,7,
Lukas Radbruch
4, Kris Vissers
1and Yvonne Engels
1Abstract
Background: By measuring the quality of the organisation of palliative care with process and structure quality
indicators (QIs), patients, caregivers and policy makers are able to monitor to what extent recommendations are
met, like those of the council of the WHO on palliative care and guidelines. This will support the implementation of
public programmes, and will enable comparisons between organisations or countries.
Methods: As no European set of indicators for the organisation of palliative care existed, such a set of QIs was
developed. An update of a previous systematic review was made and extended with more databases and grey
literature. In two project meetings with practitioners and experts in palliative care the development process of a QI
set was finalised and the QIs were categorized in a framework, covering the recommendations of the Council
of Europe.
Results: The searches resulted in 151 structure and process indicators, which were discussed in steering group
meetings. Of those QIs, 110 were eligible for the final framework.
Conclusions: We developed the first set of QIs for the organisation of palliative care. This article is the first step in a
multi step project to identify, validate and pilot QIs.
Keywords: Quality indicator, Organisation, Europe, Public health, Palliative care, Europall
Background
Following the 2002 definition of the World Health
Organisation (WHO), palliative care is no longer restricted
to patients with cancer; it should be available for all
patients with life-threatening diseases [1]. Furthermore,
palliative care is applicable early in the course of the disease
and can be delivered in conjunction with interventions that
aim to prolong life. Palliative care needs a team approach
in order to relieve not only pain and other somatic
symp-toms but also to provide multi-dimensional care including
psychosocial and spiritual care and support for patients
and their proxies. This wider definition implies an increase
of the number of patients eligible for palliative care. Due
to successful medical interventions, the aging population
and improved survival of patients with chronic diseases or
with cancer, the demand for palliative care will increase
too [2,3].
In 2003, the Council of Europe launched
recommen-dations for the organisation of palliative care regarding
settings and services, policy and organisation, quality
improvement and research, education and training,
fam-ily, communication with the patient and famfam-ily, teams
and bereavement. This included further cooperation
be-tween European countries [4]. As most scientific studies
focus on clinical outcomes, it is unclear whether these
recommendations and the WHO definition have been
implemented in the organisation of palliative care in
Europe. By measuring the quality of the organisation of
palliative care, patients, caregivers and policy makers
can monitor whether in their country, specific settings
and networks for palliative care meet the
recommenda-tions of the council of Europe and of the WHO. This
information would give better insight, which is needed
for the measurement of the impact of palliative care
pro-grams [5].
* Correspondence:k.woitha@anes.umcn.nl
1Department of Anaesthesiology, Pain and Palliative Medicine, Radboud
University Nijmegen Medical Centre, Geert Grote Plein 10, Nijmegen 6500 HB, The Netherlands
Full list of author information is available at the end of the article
© 2012 Woitha et al.; licensee BioMed Central Ltd. This is an Open Access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/2.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.
A valid and reliable method for assessing the quality of
the organisation of care is the use of structure and
process quality indicators (QIs). QIs are
‘explicitly
defined and measurable items referring to the outcomes,
processes or structure of care’ [6,7]. In a systematic
review published in 2009, clinical indicators appeared to
be widely overrepresented over indicators that assess
organisational issues of palliative care, and most QIs were
developed in and for one specific country or setting [8].
Therefore, we aimed to develop a scientifically sound
European set of structure and process QIs, as a first step
in quality measurement and improvement.
Methods
The study, undertaken by partners from seven collaborating
countries (Belgium, United Kingdom, France, Germany,
Netherlands, Poland and Spain), ran from October 2007 till
September 2010 [9]. It was co-funded by the European
Executive Agency for Health and Consumers (EAHC).
QI sets can be based on existing sets of QIs,
recom-mendations from clinical guidelines, scientific literature,
best practice or expert consensus [6]. We used a
com-bination of these.
As palliative care, being a relatively young field within
health care is changing rapidly. The initial phase of this
project was an update and extension of a previous
review aiming to find already existing QIs in literature
or aspects of the organisation of the palliative care for
which QIs would be useful [8]. QIs were operationalized
as
‘measurable items referring to the outcomes,
pro-cesses or structure of care’ [6,7]. Organisation of
pallia-tive care was defined as
‘systems to enable the delivery
of good quality in palliative care’, which made us focus
on processes and structures [7]. Besides publications that
describe the development or use of QIs for the
organisa-tion of palliative care, publicaorganisa-tions were used that
describe the structure or process of good palliative care,
in order to develop QIs if not available yet.
Main database search
As an update and extension of an existing systematic
re-view, the following bibliographic databases were searched:
Medline, Scopus, PsycINFO, Social Medicine, CINAHL,
the Cochrane Database, Embase, SIGLE, ASCO, and
Google Scholar by an existing search strategy (Additional
file 1: Appendix A) [8]. If applicable, Mesh terms were
changed, as these are database-specific.
Inclusion criteria were a publication period from
December 2007 to May 2009, as the systematic review
ran until December 2007 and containing information
about the development or use of (sets of ) QIs.
Papers describing QIs about palliative care for
chil-dren, clinical outcome indicators, patient outcome and
on treatment were excluded, as well as scientific papers
that were not written in English.
The initial selection process was based on independent
screening by three researchers of title and/or abstract,
followed by a selection based on full text. Additionally,
reference lists of obtained papers were studied and hand
searches were performed (Current Opinion in Supportive
and Palliative Care, Journal of Pain and Symptom
Management, Palliative Medicine and Quality and
Safety in Health Care Journal).
The QIs derived from the search were categorized in a
framework. It was based on (1) a previously developed
framework for evalution of the organisation of general
practice and adapted for palliative care and (2) the
recommendations of the Council of Europe [4,10]. It
contains the domains 1. Definition of a palliative care
service, 2. Access to palliative care, 3. Infrastructure, 4.
Assessment tools, 5. Personnel, 6. Documentation of
clinical data, 7. Quality and safety issues, 8. Reporting
clinical activity of palliative care, 9. Research and 10.
Eduation.
Grey literature search
If a domain or subdomain of the framework was not
cov-ered with QIs found in the literature search, an additional
grey literature search was performed. Grey literature was
defined as
‘literature which has not been formally
pub-lished in peer- reviewed literature’ [11]. Inclusion of
grey literature was restricted to reports from government
agencies or scientific research groups, white papers and
websites from national organisations of the seven
partici-pating countries. Finally, the network of the Europall
research group was used to identify relevant papers.
Methods of screening and article selection
The steering group of the Europall project planned two
meetings in September and October 2009 with all project
members (Additional file 1: Appendix B).
QI selection
The draft set of structure and process QIs was discussed
during the first steering group meeting in September
2009. Academic experts from several disciplines in
palliative care, all from one of the seven participating
European countries were invited. Consensus was based
on 1. whether it considered a process or structure QI
2. whether it overlapped with other proposed QIs, 3. to
which domain of the framework (Table 1) it belonged
[10] and 4. for which settings it was applicable. Based
on the grey literature search, the project partners could
suggest new QIs about aspects that were relevant but
not yet operationalised as QIs.
Table 1 Quality indicator set
Definition of a palliative care service 1 All the services below are part of a comprehensive palliative care service: Palliative day care,
Palliative home care support team, Hospice beds, Palliative hospital support team, Inpatient palliative care hospital beds, Palliative care outpatient clinic, Bereavement support
Structure indicator
All settings New developed 2 All the services below are part of a comprehensive palliative care service: Palliative day care Structure
indicator
All settings New developed 3 All the services below are part of a comprehensive palliative care service: Palliative home care
support team
Structure indicator
All settings New developed 4 All the services below are part of a comprehensive palliative care service: Hospice beds Structure
indicator
All settings New developed 5 All the services below are part of a comprehensive palliative care service: Palliative hospital
support team
Structure indicator
All settings New developed 6 All the services below are part of a comprehensive palliative care service: Inpatient palliative care
hospital beds (e.g. palliative care unit)
Structure indicator
All settings New developed 7 All the services below are part of a comprehensive palliative care service: Palliative care
outpatient clinic
Structure indicator
All settings New developed 8 All the services below are part of a comprehensive palliative care service: Bereavement support Structure
indicator
All settings New developed Access to palliative care
A. Access and availability (All settings) 9 A palliative care team is available at the request of the treating professional/team in all of the
following settings: Day care, at home, Hospital, Hospice, Nursing home, Outpatient clinic, Day care
Process indicator
All settings New developed 10 A palliative care team is available at the request of the treating professional/team in all of the
following settings: Day care (excluding palliative day care)
Process indicator
All settings New developed 11 A palliative care team is available at the request of the treating professional/team in all of the
following settings: At home (or home replacing institution s.a mental institution, prison)
Process indicator
All settings New developed 12 A palliative care team is available at the request of the treating professional/team in all of the
following settings: Hospital
Process indicator
All settings New developed 13 A palliative care team is available at the request of the treating professional/team in all of the
following settings: Hospice
Process indicator
All settings New developed 14 A palliative care team is available at the request of the treating professional/team in all of the
following settings: Care home
Process indicator
All settings New developed 15 A palliative care team is available at the request of the treating professional/team in all of the
following settings: Outpatient clinic (excluding palliative care outpatient clinic)
Process indicator
All settings New developed 16 For every professional/team specialised palliative care advice is available 24 hours a day, 7 days
a week
Process indicator
All settings Changed 17 Patients in need of palliative care and their families have access to palliative care facilities:
Throughout the entire duration of their disease
Process indicator
All settings Changed 18 Patients in need of palliative care and their families have access to palliative care facilities: With
no extra financial consequences for the patient
Process indicator
All settings Changed 19 Patients receiving palliative care have access to diagnostic investigations (e.g. X-rays, blood
samples) regardless of their setting
Process indicator
All settings Changed Primary care (Home, Nursing home)
20 Palliative care is available for the patient and their family by:Phone Process indicator
Primary care indicator
Changed 21 Palliative care is available for the patient and their family by: Visiting the patient Process
indicator
Primary care indicator
Changed 22 Palliative care is available for the patient and their family by: Bringing the patient to the service Process
indicator
Primary care indicator
Changed 23 For a palliative patient in a crisis, the following can be arranged within 24 hours: Admission Process
indicator
Primary care indicator
Changed 24 For a palliative patient in a crisis, the following can be arranged within 24 hours: An urgent
discharge to patients home
Process indicator
Primary care indicator
Table 1 Quality indicator set (Continued)
25 For a palliative patient in a crisis, the following can be arranged within 24 hours: Transfer to another setting of care
Process indicator
Primary care indicator
Changed B. Out of hours (All settings)
Staff
26 A member of a palliative care team is available 24 hours a day, 7 days a week: For palliative care consultation by phone
Process indicator
All settings Changed 27 A member of a palliative care team is available 24 hours a day, 7 days a week: To provide
bedside care in a crisis
Process indicator
All settings Changed Drugs
28 The following treatments are available for a palliative patient 24 hours a day, 7 days a week: Opioids and other controlled drugs
Structure indicator Primary care indicator Combined/ Changed 29 The following treatments are available for a palliative patient 24 hours a day, 7 days a week:
Anticipatory medication for the dying patient
Structure indicator Primary care indicator Combined/ Changed 30 The following treatments are available for a palliative patient 24 hours a day, 7 days a week:
Syringe drivers Structure indicator Primary care indicator Combined/ Changed C. Continuity of care (All settings)
31 There is a procedure for exchange of clinical information across caregivers, disciplines and settings
Process indicator
All settings Changed 32 Before discharge/transfer/admission there is information transfer to the caregivers in the next
setting regarding care and treatment
Process indicator
All settings Changed 33 There is a professional caregiver per individual palliative patient nominated as responsible‘key
worker‘ who coordinates care
Process indicator
All settings Combined/ Changed 34 The responsible‘key worker‘ pays special attention to continuity of care within and across
settings
Process indicator
All settings Combined/ Changed Inpatient setting (Hospital, Palliative care unit, Hospice)
35 General practitioners (GP‘s) are routinely called when a patient is being discharged home or transferred to another setting
Process indicator
Inpatient setting indicator
Changed 36 The discharge/transfer letter of palliative care patients contains a multidimensional diagnosis,
prognosis and treatment plan (see indicator 48 Clinical record )
Structure indicator Inpatient setting indicator Changed Primary care
37 The primary care out-of-hours service has handover forms (written or -electronic) with clinical information of all palliative care patients in the terminal phase at home
Structure indicator Primary care indicator Changed Infrastructure A. All settings Infrastructure
38 Specialist equipment (e.g. anti decubitus mattresses, aspiration material, stoma care, oxygen delivery, special drug administration pumps, hospital beds, etc.) is available for the nursing care of palliative care patients in each specific setting
Structure indicator
All settings Changed 39 There is a dedicated room where multidisciplinary team meetings within one setting takes place Structure
indicator
All settings New developed 40 There are dedicated facilities for multidisciplinary communications across settings: A dedicated
room for meetings
Structure indicator
All settings Changed 41 There are dedicated facilities for multidisciplinary communications across settings: Facilities for
video or telephone conferences
Structure indicator
All settings Changed Information about care
42 There is an up to date directory of local caregivers and organisations that can have a role in palliative care
Structure indicator
All settings New developed 43 There are dedicated information about the palliative care service: A website Structure
indicator
All settings Changed 44 There are dedicated information about the palliative care service: Leaflets or brochures Structure
indicator
All settings Changed 45 Patient information should be available in relevant foreign languages Structure
indicator
Table 1 Quality indicator set (Continued)
46 Appropriately trained translators should be available if professional caregivers and patient or family members do not speak the same language
Process indicator
All settings Changed 47 There is a computerised medical record, to which all professional caregivers involved in the care
of palliative care patients have access: Within one setting
Process indicator
All settings Combined IT systems
48 There is a computerised medical record, to which all professional caregivers involved in the care of palliative care patients have access: Across different settings
Process indicator
All settings Combined B. Inpatient setting (Hospital, Palliative care unit, Hospice, Nursing home)
49 Consultations with the patient and/or family/informal caregivers are done in an environment where privacy is guaranteed (e.g. there is a dedicated room)
Structure indicator
Inpatient setting indicator
Changed 50 Dying patients are able to have a single bedroom if they want to Process
indicator
Inpatient setting indicator
New developed 51 There are facilities for a relative to stay overnight Structure
indicator
Inpatient setting indicator
New developed 52 Family members and friends are able to visit the dying patient without restrictions of visiting
hours Process indicator Inpatient setting indicator Changed 53 There is a private place (e.g. dedicated room) for saying goodbye to the deceased Structure
indicator Inpatient setting indicator New developed C. Home care
54 For a palliative care patient staying at home there is the possibility, if needed, to provide someone (a volunteer or professional) to stay overnight if needed
Process indicator Home care indicator Changed Assessment tools
55 There is a holistic assessment of palliative care needs of patients and their family caregivers (e.g. SPARC)
Process indicator
All settings Changed 56 There is an assessment of pain and other symptoms using a validated instrument Process
indicator
All settings Changed Personnel palliative care services
A. Staff
57 The multidisciplinary team that provides palliative care consists of at least one of the following disciplines: Physician
Structure indicator
All settings Changed 58 The multidisciplinary team that provides palliative care consists of at least one of the following
disciplines: Nurse
Structure indicator
All settings Changed 59 The multidisciplinary team that provides palliative care consists of at least one of the following
disciplines: Spiritual/religious caregiver
Structure indicator
All settings Changed 60 The multidisciplinary team that provides palliative care consists of at least one of the following
disciplines: Psychologist/Psychiatrist
Structure indicator
All settings Changed 61 The multidisciplinary team that provides palliative care consists of at least one of the following
disciplines: Social worker
Structure indicator
All settings Changed 62 The multidisciplinary team that provides palliative care consists of at least one of the following
disciplines: Physiotherapist
Structure indicator
All settings Changed 63 The multidisciplinary team that provides palliative care consists of at least one of the following
disciplines: Occupational therapist
Structure indicator
All settings Changed 64 The multidisciplinary team that provides palliative care consists of at least one of the following
disciplines: Dietitian
Structure indicator
All settings Changed 65 The multidisciplinary team that provides palliative care consists of at least one of the following
disciplines: Bereavement counselor
Structure indicator
All settings Changed 66 The multidisciplinary team that provides palliative care consists of at least one of the following
disciplines: Pharmacist
Structure indicator
All settings Changed B. Education and training for staff/volunteers
67 New staff receives a standardised induction training Process indicator
All settings Changed 68 All team members have certified (accredited?) training in palliative care, appropriate to their
discipline
Process indicator
Table 1 Quality indicator set (Continued)
69 All volunteers have training in palliative care. Process indicator
All settings Combined/ Changed C. Support systems
70 All team members have an annual appraisal Process indicator
All settings Changed 71 All team members who professionally deal with loss have access to a program for care for the
carers
Process indicator
All settings Changed 72 Satisfaction with working in the team is assessed (e.g. Team Climate Inventory) Process
indicator
All settings Changed D. Organisation of care
73 Palliative care services work in conjunction with the referring professional/team Process indicator
Inpatient setting indicator
New developed 74 There is a regular interdisciplinary/multi-professional meeting to discuss palliative care patients:
daily meetings to discuss day-to- day management of palliative care patients
Process indicator
All settings Combined/ Changed 75 There is a regular interdisciplinary/multi-professional meeting to discuss palliative care patients:
weekly (inter- and multidisciplinary) meeting to review palliative care patients referrals and care plans
Process indicator
All settings Combined/ Changed E. Information sharing
76 All relevant team members are informed about patients who have died Process indicator
Inpatient setting indicator
Changed Documentation of clinical data
A. Clinical record (All settings)
77 For patients receiving palliative care a structured palliative care clinical record is used Process indicator
All settings Changed 78 The palliative care clinical record contains evidence of documentation of the following items:
Clinical summary
Process indicator
All settings Changed 79 The palliative care clinical record contains evidence of documentation of the following items:
Physical aspects of care
Process indicator
All settings Changed 80 The palliative care clinical record contains evidence of documentation of the following items:
Psychological and psychiatric aspects of care
Process indicator
All settings Changed 81 The palliative care clinical record contains evidence of documentation of the following items:
Social aspects of care
Process indicator
All settings Changed 82 The palliative care clinical record contains evidence of documentation of the following items:
Spiritual, religious, existential aspects of care
Process indicator
All settings Changed 83 The palliative care clinical record contains evidence of documentation of the following items:
Cultural aspects of care
Process indicator
All settings Changed 84 The palliative care clinical record contains evidence of documentation of the following items:
Care of imminently dying patient
Process indicator
All settings Changed 85 The palliative care clinical record contains evidence of documentation of the following items:
Ethical, legal aspects of care
Process indicator
All settings Changed 86 The palliative care clinical record contains evidence of documentation of the following items:
Multidimensional treatment plan
Process indicator
All settings Changed 87 The palliative care clinical record contains evidence of documentation of the following items:
Follow up assessment
Process indicator
All settings Changed B. Timely documentation
Inpatient setting (Hospital, Palliative care unit, Hospice, Nursing home) 88 Within 24 hours of admission there is documentation of the initial assessment of: Prognosis,
Functional status, Pain and other symptoms, Psychosocial symptoms, The patient‘s capacity to make decisions Process indicator Inpatient setting indicator Changed 89 There is documentation that patients reporting pain or other symptoms at the time of
admission, had their pain or other symptoms relieved or reduced to a level of their satisfaction within 48 hours of admission
Process indicator
Inpatient setting indicator
Changed 90 There is documentation about the discussion of patient preferences within 48 hours of
admission Process indicator Inpatient setting indicator Changed
Table 1 Quality indicator set (Continued)
91 A discharge/transfer summary is available in the medical record within 48 hours after discharge/ transfer Process indicator Inpatient setting indicator Changed All settings
92 There is documentation of pain assessment at 4 hour intervals Process indicator
All settings Changed 93 The discussion of patient‘s preferences is reviewed on a regular basis (in parallel with disease
progression) or on request of the patient
Process indicator
All settings Changed 94 There is documentation that within 24 hours after patient transfer, the responsible physician in
the receiving setting has visited the patient
Process indicator
All settings Changed 95 There is documentation that within 24 hours after patient transfer, the new palliative care team
in the receiving setting has visited the patient
Process indicator
All settings Changed Quality and safety issues
A. Quality policies
96 The palliative care service has a quality improvement program Process indicator
All settings Changed 97 There is documentation whether targets set for quality improvement have been met Process
indicator
All settings Changed 98 Clinical audit are part of the quality improvement program Process
indicator
All settings Changed 99 The setting uses a program about early initiation of palliative care (e.g. the Gold Standards
Framework)
Process indicator
All settings Changed B. Adverse events
100 There is a register for adverse events Process indicator
All settings Changed 101 There is a documented procedure to analyse and follow up adverse events Process
indicator
All settings Changed C. Complaints procedure
102 There is a patient complaints procedure Process indicator
All settings Changed Reporting clinical activity of palliative care services
103 The palliative care service uses a database for recording clinical activity Process indicator
All settings Changed 104 The following is part of the database: Diagnosis, Date of diagnosis, Date of referral, Date of
admission to the palliative care service, Date of death, Place of death, Preferred place of death
Process indicator
All settings Changed 105 From the database the service is able to derive: Time from diagnosis to referral to palliative care,
Time from referral to initiation of palliative care, Time from initiation of palliative care to death, Frequency of unplanned consultations with the out-of-hours service for palliative care patients who are at home, Frequency of unplanned hospital admissions of palliative care patients, Percentage of non-oncological patients receiving palliative care
Process indicator
All settings New developed
106 Based on the database, an annual report is made about the service Process indicator
All settings Changed Research
107 There is evidence that the palliative care service is involved in research in palliative care (e.g. authorship of publications, research grants)
Process indicator
All settings Changed Education
108 All health and social care students have standardised learning objectives for basic training in palliative care
Process indicator
All settings Changed 109 All health and social care professionals have standardised learning objectives for continuing
basic training in palliative care
Process indicator
All settings New developed 110 There is a program for specialised training in palliative care for professionals working in a service
that provides specialised palliative care
Process indicator
All settings New developed
3. Based on this meeting, adaptations were made and a
new draft QI set was presented in the second steering
group meeting in October.
Results
Search flow
The literature search resulted in 541 papers, including a
previous systematic review on quality indicators for
palliative care [8]. Most of the papers came from the
database search (n=527), followed by the hand search
(n= 29) and least of grey literature search (n=14).
In the screening process 16 duplicates were identified,
and titles and abstracts of 511 papers were searched. Of
these, 389 documents were excluded, as they did not
contain QIs. Full papers were obtained of 122
publica-tions, from which 63 papers were included; 57 resulting
from the database search [12-68] and another six papers
from the additional hand searches (Figure 1) [69-74].
Results grey literature search
The grey literature search yielded seven papers, deriving
from Belgium, the Netherlands and the UK [9,75-80].
These sources included government sites, national
health organisations and national institutes (Figure 1).
This additional search resulted in the development of 53
QIs, divided over almost all domains (see Additional file 1).
QI development
Sixhundred-thirtyfive QIs were derived from this literature
review. After screening of duplicates, selecting process
and structure QIs and combining QIs covering the same
topic, the remaining 151 QIs were organised in the
frame-work and discussed in the first steering group meeting.
The two steering group meetings resulted in a reduction
from 151 to 110 QIs (Additional file 1: Appendix C)
(Figure 2). For instance the domain about finance QIs was
excluded for the final set as the QIs were more useful on
national level than in the setting specific palliative care
institutions.
The rest of the QIs were distributed over the
frame-work (Table 1) [10].
The majority of the 110 QIs were process QIs (n=76),
the other structure QIs (n=34). Some of the QIs (n=24)
were only applicable in specific settings; ten in primary
care, thirteen in inpatient settings and one in home care.
The others were meant for all settings that deliver
pallia-tive care.
Twenty-four QIs were developed based on
organisa-tional aspects found in literature (Table 1, QI 51).
Finally, several QIs (n= 86), were changed in their
pres-entation of text during the procedure. For example,
originally developed QIs for other settings like the
inten-sive care unit, were adapted to make them appropriate
for palliative care settings.
Discussion
We were able to develop an international framework
with 110 QIs to assess the organisation of palliative care
in several kind of settings. To our knowledge, this study
presents the first systematically developed international
set of QIs on this topic. Part of the QIs are setting
spe-cific, whereas others will be applicable in all kind of
set-tings that deliver palliative care.
Where Pasman et al. performed a systematic review
on all kind of QIs for palliative care, and Pastrana et al.
focused on outcome indicators for Germany, we focused
on process and structure QIs [8,81]. By using an
international perspective and by not limiting the study
to symptom control, our study follows the
recommenda-tions of Ostgathe et al. [82]. Our set also contains two
QIs that are linked to the World Health Assembly’s
pro-posed global health indicator
‘Access to palliative care
assessed by morphine-equivalent consumption of strong
opioid analgesia (excluding methadone) per death by
cancer’, but without the restriction to patients with
can-cer [83].
Strength and limitations
We chose an approach with several consecutive
methodo-logical steps to develop a set of QIs. Of those aspects that
were considered important for the organisation of
pallia-tive care but of which no QIs could be found, we
devel-oped QIs ourselves [84]. Of those QIs that were develdevel-oped
for a restricted group of patients or setting (e.g. ICU or
vulnerable elderly) we checked whether we could rephrase
them into QIs for more types of settings or palliative
patients. Defining QIs in a consensus procedure is a good
option if scientific literature is not yet available [7],
par-ticularly because it combines several methods to improve
validity. Using a group approach has the advantage that
participants can share their expertise and experience.
Groups often make better decisions than individuals [85].
The naming of QIs as process or structure indicators
can be discussed. Yet, this only influences the
categorisa-tion and not the content, importance or use of a QI.
Another strong aspect of our procedure is the
inclu-sion of grey literature, which created the possibility to
include documents from important although not
scien-tific sources [86].
As the Europall project was a collaboration of seven
European countries, only experts of these countries
were represented in the steering group meetings. Other
European countries, with different health care and
fi-nancing systems, cultures and palliative care, were not
involved at this stage.
This first step resulted in a set of structure and
process QIs, that can help professionals or settings to
measure the quality of care of their setting. In a next
step, a subset will be developed of which each QI is
ap-plicable in the seven participating countries.
Based on a modified RAND Delphi method the
follow-ing set will be interestfollow-ing for international comparison.
The advantage of this comprehensive set enables each
country and each setting the opportunity to see all QIs
that are available on this topic.
The last step will describe a pilot study to test the set
of QIs on face-validity, applicability and discriminative
power. This includes almost all (26) European countries.
These studies will be published separately.
Further research
The final set can be used to provide feedback to settings or
countries to reflect on their performance, for supporting
quality improvement activities, accreditation, research, and
enhancing transparency about quality. They can be used to
evaluate the implementation of the WHO definition and
the recommendations of the council of Europe [1,4].
From 2011 to 2015, a follow-up project to Europall
called IMPACT (funded by the EU 7
thframework) will
develop and test strategies to implement these QIs.
Conclusions
This review resulted in the first comprehensive
frame-work of QIs for the organisation of palliative care.
Additional file
Additional file 1: Supplementary online content. Development of a set of process and structure indicators for palliative care: the Europall
project. Appendix A- Search strategies for databases. Appendix B- Project partners. Appendix C- Indicators set for the organisation of palliative care. Competing interest
This work was partly funded by EAHC (Executive Agency for Health and Consumers, grant: 2006111 PPP‘Best practices in palliative care’). The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript. The authors have no financial disclosures. Authors' contributions
KvB participated in the literature search, design of the study and drafted the manuscript. NA participated in the literature search, design of the study and drafted the manuscript. JH participated in the literature search, design of the study and drafted the manuscript. JMM was actively involved in the selection and developmental process of the QI. She attended the expert meeting. IC was actively involved in the selection and developmental process of the QI. She attended the expert meeting. LR and helped to draft the manuscript and had an advisory role. KV conceived of the study and participated in its design and coordination and helped to draft the manuscript. YE conceived of the study and participated in its design and coordination and helped to draft the manuscript. All authors read and approved the final manuscript.
Acknowledgements
The authors are grateful to the EAHC (Executive Agency for Health and Consumers) for funding the Europall project. We would like to thank Hristina Mileva from EAHC specifically for her help and support. Further our thanks also go to the many individuals and organisations in the seven countries that contributed information to the project. We are especially grateful to all those who shared their views with us.
Belgium: Johan Menten
England: Sam Ahmedzai, Bill Noble France: Jean-Christophe Mino
Germany: Eberhard Klaschik, Birgit Jaspers Poland: Wojciech Leppert, Sylwia Dziegielewska
Spain: Xavier Gomez Batiste Alentorn, Silvia Paz, Marisa Martinez Munoz Author details
1Department of Anaesthesiology, Pain and Palliative Medicine, Radboud
University Nijmegen Medical Centre, Geert Grote Plein 10, Nijmegen 6500 HB, The Netherlands.2Department of Radiotherapy-Oncology and Palliative
Medicine, University Hospital Leuven, Leuven, Belgium.3Academic Unit of Supportive Care, School of Medicine and Biomedical Sciences, The University of Sheffield, Sykes House, Little Common Lane, Sheffield S11 9NE, UK.
4Department of Science and Research in Palliative Medicine, University of
Bonn, Malteser Hospital Bonn/Rhein-Sieg, Bonn, Germany.5Réseau de Santé, Paris Sud, France.6Université Paris Descartes, Sorbonne Paris Cité, Public
Health, Paris F-75006, France.7AP-HP, Cochin Teaching Hospital, Palliative Medicine, Paris F-75014, France.
Received: 20 October 2011 Accepted: 31 October 2012 Published: 2 November 2012
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doi:10.1186/1472-6963-12-381
Cite this article as: Woitha et al.: Development of a set of process and structure indicators for palliative care: the Europall project. BMC Health Services Research 2012 12:381.
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